FAQ

Here are answers to some frequently asked questions.

Who are we?

Liz Scarff and David Carter of Fieldcraft Studios; Dominic Nutt, a journalist and cancer patient diagnosed with a neuroendocrine tumour in January 2012; Alexander Masters, a biographer and journalist, whose friend and writing collaborator, Dido Davies, died of neuroendocrine cancer in 2013.

What did we do?

We raised £2m to rescue a new drug that had shown considerable pre-clinical promise for treating neuroendocrine cancer.

It had been put aside because the researchers at Uppsala University (where the drug had been developed) could not get funding to develop the potential medication further.

Through social media and Indiegogo, and newspapers and radio, we and 2000 other people from around the world raised the money in eight months.

There were no wristbands, no fancy launches and no rock concerts. It was just us and patients and patient advocates.

Traditional funders were not interested in this rare disease and there was no money in it for venture capitalists.

So we cut out the gatekeepers, and appealed straight to the people.

What is this virus – how does it work?

It is an oncolytic virus: a virus that attacks cancer cells.

Since the 1880s, doctors have known viral infections can cause dramatic reductions in tumours. In 1890, the Italian de Rice discovered that prostitutes with cervical cancer went into remission whenever they were vaccinated against rabies, and for several years he wandered around the Tuscan countryside kindly injecting ladies with dog saliva.

In another 20th century case, a fourteen-year old boy with lymphatic leukaemia caught chickenpox: within a few days his grotesquely enlarged liver and spleen had returned to ordinary size; his explosive white-blood cell count, shrunk nearly fifty-fold, back to normal.

But it wasn’t until the 1990s, and the boom in understanding of genetics, that scientists finally learned how to harness and enhance this effect. Two decades later, the first results are starting to be discussed in cancer journals.

To geneticists, the science makes perfect sense. It is a fact of human biology that healthy cells are programmed to die when they become infected by a virus, because this prevents the virus spreading to other parts of the body.

But a cancerous cell is immortal; through its mutations it has somehow managed to turn off the bits of its genetic programme that enforce cell suicide.

This means that, if a suitable virus infects a cancer cell, it could continue to replicate inside it uncontrollably, and causes the cell to ‘lyse’ – or, in non-technical language, tear apart.

The progeny viruses then spread to other cancer cells nearby and repeat the process. A virus becomes, in effect, a cancer of cancer.

The Uppsala virus is a genetically engineered adenovirus. It’s scientific name is Ad5[CgA-E1A-miR122]PTD. A virus that usually causes colds in humans, it has been modified to attack neuroendocrine cancer cells.

It works in a variety of ways, in addition to the basic one described in the last paragraph. It has also been modified to encourage the immune system to recognise and attack neuroendocrine tumours.

For more detailed information you can look at the four papers the research team at Uppsala have published, in leading peer-reviewed journals, about the development of this potential new treatment.

Will it work in humans?

We don’t know. That’s the purpose of the trials: to see if the drug works.

Pre-clinical evidence is promising, but that proves nothing.

In pre-clinical tests many drugs show that they can kill cancer cells. Bleach, for example, is excellent.

We need to have this drug tested carefully and cautiously in humans first, before we can see whether it will be both safe and effective for neuroendocrine cancer patients.

Will it work for other cancers?

If it works for neuroendocrine cancers, then the virus could possibly be adapted for other cancers – but it would need to go through further trials to see if also worked against other types of tumour.

Until the drug is proven to work using the accepted method of clinical trials, we have to be very cautious about any claims.

All we can say is that the pre-clinical work so far looks promising.

Is the Swedish research credible?

Yes. Uppsala University is one of the leading medical research institutes in the world and a European Centre of Excellence for the treatment of neuroendocrine cancer.

Professor Kjell Öberg, the clinician now running the trial, is a former President of the European Neuroendocrine Tumour Society (ENETS).

Pre-clinical results have been published in peer-reviewed journals, and the clinical trial now underway has had to get over all the usual, rigorous ethical and regulatory hurdles, which ensure that the scientific research and trial design are of good quality.

Have you asked Apple for the money?

Yes. However, at this time they feel unable to help.

If this potential treatment is so good, why did nobody fund it before iCancer?

Pharmaceutical companies are interested in research only when it looks likely it will produce a profit.

This research is some years away from that at this stage. In addition, neuroendocrine cancer is comparatively rare, so the market for the new drug is not huge. This will never be a blockbuster drug. Also, the Swedish research team placed much of their research in the public domain, in order to help others with their research.

This act of altruism has meant that the Swedish team is unable to patent their research. This, in turn, makes it less attractive to pharmaceutical companies, especially at this early stage.

The Swedish team has received grants from Swedish government funding and the Swedish Cancer Society (equivalent to Cancer Research UK). The grants cover the research to develop viruses for therapy but they are not big enough to run clinical trials with an advanced medicinal product where special rules apply (viruses falls under this category in Europe).

Are we doctors?

No. The people behind the fundraising campaign know nothing about medicine. We raised the money for the experts at Uppsala University because we thought that their promising treatment should be given a chance.

We rely on expert advice from medical professionals around the world. Every thing we do and write is checked and double-checked by doctors and researchers who are leaders in their fields.

iCancer has run a collaborative campaign, bringing ordinary patients and their families together with an international group of top scientists and pharmaceutical experts, in order to get a promising, yet abandoned drug tested in human trials.